A Crip in Philanthropy: The Best of Times, the Worst of Times

The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights

An earlier version of these remarks was shared at Congregation Beth Jacob in Redwood City, California on March 3, 2018. I deeply appreciated their welcome when I was invited to address their community by Anne Cohen, an activist, disabled parent, and board member at the organization where I am Director of Development, Disability Rights Education & Defense Fund (DREDF) or, as Anne has dubbed it, “the ACLU of disability rights.” CBJ’s cross-disability access allowed me to take the first step in organizing community support: communicate.

I grew up with a disability, one that is genetic. I have been a plaintiff in an ADA access case here in California. It involved a bathroom. That required a lot of talking publicly about my using the bathroom. For disabled people like me – physically disabled — being disabled means never knowing where your next accessible public bathroom is. Today. Nearly thirty years after the ADA was passed. And keep in mind those 30 years coincide with my fundraising career in social justice non-profits and their philanthropic allies. Those are whole decades of trying my best to use empathy and imagination to shift that stubborn disability narrative that says I receive but can’t give. That disability is a health thing. That I need a cure when a toilet would be preferable. That I am charity, personified, not justice, denied.

I know! You thought we’d be having an elevated discussion of principles and humanity and what-all, and you get me, this person talking about using the bathroom. But, if you’ll forgive me for saying so, bathrooms are where a lot of social action takes place. It’s where stuff gets real. It is where we are vulnerable.

This is what a social justice disabled fundraiser looks like who, to be honest, is working really hard to breathe during her talk.

CORRECTION: That description should include “white, visibly disabled, employed, college educated, progressive.” If there are darn few of me, there are even fewer who are also PoC, have invisible disabilities, have been shut out of places like college, and are forced into poverty by a lack of accessible workplaces and/or restrictive public benefits. The philanthropic sector needs diverse disabled fundraisers/activists who are fluent in disability culture, politics, and movement history if it is going to achieve inclusion. Its first step is realizing that transformation begins with their own organization: Does a foundation have any “out,” disability culturally competent program staff? Are their metrics for disability-related projects appropriate? Do they require fundees to be led by disabled experts in their field? IOW: Are disabled people leading and informing the foundation with regard to work being done in disabled people’s name?

I’m being upfront with this to set a tone, to show you vulnerability in real life, to illustrate the stakes. We’ve achieved a lot in this country by establishing that disabled people have rights. But this past year has shown us how fragile those rights are. There’s a bill that undermines the ADA that just passed the House. The Affordable Care Act is still under attack. Betsy DeVos is determined to get rid disabled children’s due process rights. Medicaid is also still very much at risk, and recent events like the California fires reveal that disabled people are still left out of emergency planning and housing.

Given all that, I don’t have any trouble understanding why disabled people and parents of disabled children respond by trying to create zones of inclusion: a local school, a playground, their company, supportive housing, this beautiful building we’re together in. That’s always been the case.

But I fear we’re losing the confidence to demand that access and inclusion be knit into the fabric of our country’s communities as a matter of course.

Instead, we’re becoming ever-more conditioned to accept that access and inclusion exist as pockets of resistance, a series of stepping-stones, where I mentally make a note to myself, “Congregation Beth Jacob has an awesome bathroom if I’m the area.”

And bear in mind: I pretty much represent as Dickens wrote, “the best of times.” Invisible disabilities, intellectual/developmental disabilities, and mental health issues are highly stigmatized. The abuse of autistic people is portrayed as the understandable result of stress. Too many disabled people – people of color, especially – are shoved out of school and into prison, face immigration threats, or live in poverty. Or get killed by police. The worst of times.

Which brings me to what we do at DREDF:

The Disability Rights Education & Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

We use impact litigation, policy development, and train families, lawyers, child welfare professionals to fight for fair and equal access to public education, public benefits, health care, transportation, and the courts, whether they are delivered in the bricks-and-mortar world or online.

We also push companies to build access into their products from the very beginning. We’ve worked with Google, for example, on driverless cars – on the policy and built issues that would affect our access to such technology. Innovation is pretty central to living with a disability. One of our key cases ended in a settlement that forced Netflix to caption their streaming library. That one settlement has had a ripple effect across the industry – and its not just about watching movies. It means a deaf employee can access a mandatory training video, someone with an auditory processing issue can access an online college class. DREDF was a central player in passing the ADA in 1990 and now we’ve been central to enforcing the law in the digital world that didn’t even exist then.

All of this means: DREDF organizes and defends those many, many zones of inclusion, and we use the rule of law to create new ones.

When you see amazing protestors like ADAPT occupying the Capitol to save healthcare, the ADA? DREDF preserves that direct action in law and regulations. That’s how we got started: DREDF was created to be the legal defense arm of the independent living movement in the 70s.

Our work has always been about systemic change. It’s the most efficient way to change the world. Changing the world is never checked off on the to-do list.

We use the rule of law to make the world a safer place in which to be vulnerable. Even if you would never describe yourself as disabled, you know what it is to be vulnerable. Maybe it’s not safe for you to be out as disabled. DREDF will say the word “disabled” when others cannot.

You’ve been ill. Maybe you broke a bone. You’ve definitely been a child. That’s why I believe DREDF’s work is relevant to you.

DREDF provides a framework for respecting the dignity and human rights of disabled people. In our country, that framework is civil rights law.

That framework is how we assert our authority on matters that directly affect our lives. Nothing about us, without us.

You’ve just completed a month of disability awareness and this community really does get disability and inclusion. One area of common concern we have is about disability inclusion and young people. One-third of DREDF’s work is about the rights of disabled children, and how entwined healthcare and education access are.

All children have dignity that deserves respect and protection. We know that young adults with disabilities deserve a fair shot at living the kind of like they want, and education is key to that. Of course they also deserve support. Show me one happy, successful adult non-disabled adult who hasn’t gotten help.

Who’s directly affected by DREDF’s work?

Preschoolers who are suspended. Preschoolers with disabilities who get punished for noncompliant behavior. Yes, you heard me right. It’s a thing.

Foster youth with disabilities

Parents, kin caregivers of disabled children

Families that rely on Medicaid to survive and have public school services

Young people who want jobs, or college, or just to live in the community

Any adult who needs meaningful health coverage

…in other words, DREDF’s work protects a huge number of people. If I stood up here long enough, it would eventually protect most of you.

Dignity and Human Rights

When I was preparing for today and the dignity part, and human rights, I kept coming back to costumes. I was remembering my oldest nephew when he was 5. He kept pulling me down the hall to his room to show me his costumes. Because, you know, costumes and cosplay are a year-round thing now. He had a bunch! Spiderman. Batman. Green Lantern. A vampire. And a tiger.

This all leads back to dignity. In theory, people believe that I have dignity as a disabled person. Whether I can walk or not, breathe on my own or not, or whatever. I have dignity.

I said “in theory” because while people believe in the dignity of disabled people, that belief comes with conditions. I qualified it because—and I’m sorry to be crude—dignity is a coded word for many disabled people. It often has a different definition to those who aren’t yet disabled. To them, dignity means being able to use the toilet without assistance. If you can’t do that, you’ve lost your dignity, case closed, end of discussion. It’s as if your non-disabled body – the one that uses the toilet without anyone’s help – is actually your Dignity Suit. Dignity as a costume.

This is clearly an awesome Spiderman costume but masks, outfits, and abilities don’t have anything to do with dignity. Courtesy SuperHeroStuff,com

Dignity is not a Spiderman costume, it’s not becoming someone other – someone better, someone more powerful – someone other than the flawed, often powerless person who I am. Dignity is not a costume. Dignity is not an ability. Dignity is not what you look like.

Dignity is intrinsic. “They can’t take that away from me,” as the old Sinatra song goes. But people, policies, and prejudices can offend my dignity, assault my dignity, violate my dignity. That’s where DREDF’s civil rights work comes in. Because if there’s one other thing dignity is not, it’s authority. DREDF’s work inserts authority. The law guarantees the authority to stop the offenses, assaults, and violations.

While the law does not bestow dignity or human rights, it does protects them. It puts people who might violate our rights on notice, to remind that doing so will carry consequences.

If the grand success of the 20th century was the rise of disability as an accepted political identity – and it was! — we need to make the 21st century the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights.

Including disability as a given factor in most people’s lives is not just essential to successfully advancing the rights of disabled people. It’s essential to advancing the rights of members of minority communities, survivors of violence and/conflict zones, and veterans; people who are neuro-atypical; people who live with chronic ailments and have survived catastrophic illness, people who are young and old; male, female, and anywhere on the gender spectrum.

While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”

But we need to use the framework for respecting the dignity and human rights of disabled people and, in our country, that framework is civil rights law. We need to assert our authority. We need to use the rule of law.

Ensure access to healthcare for children and adults with disabilities, and fighting to preserve Medicaid, Medicare, and the protections gained in the Affordable Care Act.

Empower diverse disability rights constituents through national-level community organizing work on multiple civil rights issues – because empowerment does not allow itself to be confined to a single issue — and serving as a bridge to policy leaders and the media.

Continue our commitment to dismantling and disrupting the school-to-prison pipeline that derails the young lives of far too many youth of color, particularly Black boys who have disabilities.

Protect any encroachments on the Americans with Disabilities Act (ADA). Work that includes holding the digital world accountable and making sure it is accessible and equally available to people with disabilities. Wherever digital society exists, we will follow and demand access.

If you know disability first hand; if your family members, friends, colleagues know disability; if you’re not affected by disability (yet) – we need all of you. And to anyone who is being kind enough to listen but isn’t directly affected by disability – I especially want you to tell you that there’s a role for you in our advocacy, because you may have the bandwidth others don’t.

I was nervous getting ready to talk to you. I worried I wouldn’t be able to share the emotion behind our work. But I found out a few days ago that a family member is seriously ill and emotion is not a problem!

What I want for them, for anyone, is the dignity I was afforded as a disabled child: the freedom to feel safe in the world with my disability.

I want them free to focus on their health. Not be sick AND terrified about affording what they need while they’re vulnerable. I have no illusions about curing them, that’s not what I can do. But the world, making it more decent, that’s my job. That’s what DREDF does. That’s what working together makes possible.

Thank you!

A Crip in Philanthropy (CRIP) is an occasional column about the realities of working in the philanthropic sector as a white, disabled fundraiser for cross-disability advocacy and other social justice issues in community-based organizations. They are the author’s private opinions about physical and attitudinal barriers to success and opportunities to contribute disability cultural fluency.